Genetic counselling and testing in pulmonary arterial hypertension: a consensus statement on behalf of the International Consortium for Genetic Studies in PAH
Author(s)
Type
Journal Article
Abstract
Pulmonary arterial hypertension (PAH) is a rare disease that can be caused by (likely) pathogenic germline genomic variants. In addition to the most prevalent disease gene, BMPR2 (bone morphogenetic protein receptor 2), several genes, some belonging to distinct functional classes, are also now known to predispose to the development of PAH. As a consequence, specialist and non-specialist clinicians and healthcare professionals are increasingly faced with a range of questions regarding the need for, approaches to and benefits/risks of genetic testing for PAH patients and/or related family members. We provide a consensus-based approach to recommendations for genetic counselling and assessment of current best practice for disease gene testing. We provide a framework and the type of information to be provided to patients and relatives through the process of genetic counselling, and describe the presently known disease causal genes to be analysed. Benefits of including molecular genetic testing within the management protocol of patients with PAH include the identification of individuals misclassified by other diagnostic approaches, the optimisation of phenotypic characterisation for aggregation of outcome data, including in clinical trials, and importantly through cascade screening, the detection of healthy causal variant carriers, to whom regular assessment should be offered.
Date Issued
2023-02-01
Date Acceptance
2022-10-07
Citation
European Respiratory Journal, 2023, 61 (2)
ISSN
0903-1936
Publisher
European Respiratory Society
Journal / Book Title
European Respiratory Journal
Volume
61
Issue
2
Copyright Statement
©The authors 2023. This version is distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0 (https://creativecommons.org/licenses/by-nc/4.0/) For commercial reproduction rights and permissions contact permissions@ersnet.org
License URL
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/36302552
PII: 13993003.01471-2022
Subjects
Bone Morphogenetic Protein Receptors, Type II
Familial Primary Pulmonary Hypertension
Genetic Counseling
Genetic Predisposition to Disease
Genetic Testing
Humans
Hypertension, Pulmonary
Mutation
Pulmonary Arterial Hypertension
Publication Status
Published
Coverage Spatial
England
Article Number
ARTN 2201471
Date Publish Online
2023-02-23